Joe-isms

Joe comes out with the funniest observations on life.  Mostly I've just shared them on my Facebook page and with family, but I decided to collect as many as I could remember and put them in a blog.

I was dressed all in purple one day and Joe told me that I "looked like a plum."  Since he likes plums, I think it was a compliment, but it is always fun to try to translate the autistic mind.

He told me earlier this year that he hoped if he had kids that they were more like him and not like Alan because "Alan is just work, work, work, work!"

Joe took one look at this house (across the street from Alan's camp) and said, "That is really unsafe.  Alan could NOT live there."  (In case you can't tell from the picture, there is a second floor door that opens to a porch roof and there are no handrails.)

Once Joe's homeroom teacher had been out sick for several days.  When she saw Joe on her first morning back she said, "I really missed you, Joe!"  His response?  "Well I managed to do just fine without you."  Luckily, she laughed and he amended it, "Well, I mean, it is good to have you back, too."

One night when we had Chinese for dinner and my fortune was something like "Your house will always have peace."  Needless to say, this gave DH and I quite a chuckle.  When we stopped laughing, Joe says, "That will never happen!" in a very matter of fact voice.  Another night there was no fortune in my fortune cookie and Joe decided that meant I was "unfortunate".

A few weeks ago, when I mentioned to Joe that I had a stomachache, he asked me if I thought "I might be getting pregnant."  (At that moment?!?!)

When I had a minor fender bender less than a year after totaling my previous car, Joe wanted to know if the new car survived.  (No query on me, I guess he figured I was walking and talking so I must be fine.)  When I told him that yes the car would be fine, it just needed a little repair, his response was, "Good.  Because I thought you were going through cars awfully fast."

Most parents try to prepare their child for the world.  I think I might have to prepare the world for my child!

Truth in Advertising

I got Alan his first Autism t-shirt when he was pretty little.  We were going on vacation and I wanted a shirt for him to wear when we were in unfamiliar territory that identified him as having autism so that people could understand why he was acting the way he was acting! 

We were so happy with people's reactions, that we came home and ordered 3 or 4 more.  We've added several a couple times of year since then and prefer to dress him in them on the weekends.  We just got a new batch last week and I can't figure out my favorite.  I love them all!



Sometimes they just say "Autism Awareness" and sometimes they are more humorous.  Over the years we have had:

• I have autism and I am a good boy.  My mom and dad are doing the best they can.  Friendly smiles are appreciated, parenting advice is NOT.
• Why be normal?
• I'm not a brat, my genes just don't fit.
• I have autism.  Thanks for being patient with me.
• Autism:  Seeing the world from a different angle.
• Staring at me will not cure my autism.
• Just because I can't talk doesn't mean I don't understand.
• I have autism.  Please be nice to my mom.
• Warning:  Autism meltdown probability high.
• I'm not rude, hyper or spoiled.  I'm autistic.
• Stare if you must.  I'm ignoring you anyway.
• Eye contact is overrated.
• I have autism and I'm ignoring you.
• Autism:  Being different can be a good thing.
• I have autism and I think you are weird, too.

But my all time favorite is:

• Keep staring and it might cure my autism.  Then we can work on YOUR social skills.

Thank goodness for a sense of humor!

Night and Day

My boyz are as different as night and day.  We've all heard the expression ad nauseum "If you've met one person with autism, you've met one person with autism." but even the most jaded person in the world would think that two boyz from the same gene pool, raised in the same environment with the same diagnosis would have more things in common than not in common.

I'm here to provide evidence to the contrary.

Both my boys have communication problems.  Joe didn't talk at all until he was almost 3 and then started spouting words and phrases from books at a phenomenal pace although comprehension is still an issue at 18.  Alan, on the other hand, seemed to develop typically until he was about 2 and then rapidly regressed and seemed to stagnate.  Grrrrr  Just when you think you have this autism figured out, the second one is completely different from the first. 

What was difficult for Joe (potty training) happened almost overnight with Alan.

What worked so well for Joe (ABA) had almost no effect on Alan -- he just ritualized things. 

Alan goes barefoot every chance he gets (even in this picture from last December when there is still ice in the raingauge) but Joe puts on his sandals every time he needs to step on the grass because of his sensitivity issues.

Joe always has something in his hands in his toddler pictures (usually several somethings) but Alan always wanted his hands free to climb.

Joe has always been sound sensitive.  He hated fire alarms at school, he used to wear noise muffling headphones for watching fireworks (and we weren't that close) and he still wears them for cutting the grass.  Alan likes making the most piercing noises known to man but doesn't seem to care what sort of noises are in the environment.

Even for things that they both loved (their wooden toy trains) they played completely differently.  Joe would carry around a handful most of the time but when he played trains, it was to run them along the track stimming out of the corner of his eye.  Alan likes to make very long continuous trains and crash them off a high surface.

Joe is unbelievably gentle for a boy.  He doesn't like violence and has only lashed out physically a handful of times.  Alan came out of the crib headbutting.  I have a very vivid memory of telling him no about something when he was barely walking and him turning around and headbutting Joe in the back.


They both love swimming, but Alan loves the ocean and waves and Joe is skittish of critters and prefers swimming pools and his mask.

Joe used echolalia and scripting to start talking.  He would take a phrase he had heard in a book or a movie and apply it to a different situation to come up with an expression that was most times appropriate.  Alan just scripts for the stim.

Alan is a complete daredevil and climbs to the top of everything while Joe is a little bit scared of heights.

Alan has been known to elope on more than one occasion (going so far as to attempt to walk to his aunt's house 5 miles away), but Joe just leaves the situation and then comes back when he has calmed down.

Joe is a complete pack rat while Alan loves to "clean up" and has thrown out numerous things we then had to fetch out of the trash including silverware and unwanted toys.

Joe has always loved crafts of all sorts, but paper/pencil activities are torture for Alan.

Joe always slept like the dead but Alan had a more difficult time falling asleep and tended to wake up at first light.  This has improved since he has become a teenager but he is still our usual weekend alarm clock.  Trust me, it is impossible to sleep through a 160 lb. kid back flipping out of bed on the floor above you!

Alan is very motivated by "task completion".  At school, they frequently use finishing a job as the reward for doing the job itself.  We joke that this is the reason Alan gets in the ocean and starts swimming for the horizon -- he has to get to the other side!  Joe on the other hand, loves to start projects ("I am going to type all the numbers from 1 to 1,000,000.") and a few days later he loses his motivation. 

So for those people out there that do not like the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) changes to the definition of autism, I would like to point out that I think in many ways this will be more accurate.  Under the DSM-IV, both my boyz are "PDD-NOS".  This does not even begin to cover their complex differences.  At least with DSM-5 they will be level 1 (Joe) and level 3 (Alan).

Rob Growski of Lost and Tired said, "The most dangerous mistake in Autism is generalization."  He's got that right!

The second born

Alan was soooooooo different from Joe as a baby.  He was cuddly, social and just fun.  I thought then that most of it was because I was a more relaxed mom and I am sure that was a significant part, but I also believe he was just more typical.

He was however a huge baby.  He was 10 lb. 7 oz. and 22" long and he was 2 days early!  I had four different people (including the nurse at our parenting class) ask me if I was having twins.  That was very hard on Mom’s morale!  

In fairness to the nurse (and the other three peeps) I did gain 49 lbs. that I would claim.  I might have gained more but I was terrified to get on the scale at the end.

Alan always had a twisted foot.  It is even visible in his crib.  And when he started to crawl, his foot was always getting in the way.  I think the poor guy was just cramped in the womb and his foot grew that way.  A little more guilt for mom.  Even with his twisted foot, he walked ran at 10 months although his gait is off even today.

In many ways Alan was the classic second child (at least in our family).  He was resourceful, opinionated, and mischievous.  

In our 1999 Christmas letter I said "Alan is 15 months old and already has about 20 words so hopefully we won't have any language difficulties this time around."  Ha!  Mom was so delusional!

Of course by the 2000 letter, things were different. 
Unfortunately, Alan is not talking much and just got tested and approved for First Steps (the program which helped Joe get his speech and language therapy before age 3).  Sigh.  Here we go again.  If there was one lottery in life we would have preferred NOT to win it would be the "All our kids need Special Education for Speech and Language difficulties."

          
And yet when I went looking for pictures for this post I found dozens of pictures of Alan staring intently at other people (usually children) rather than at whoever had the camera.  I didn't have that with Joe.  I can't imagine I culled them all out so I think Joe just wasn't as interested in other kids as Alan was.

The differences as they have grown and developed have been just as noticeable.  Of course in the "mom guilt" column I have the extensive language journal I compiled for Joe and with Alan I could only look in the photo album and old Christmas letters and hope I was interpreting things correctly.

Next up:

Comparing and contrasting the two … because for two children from the same genetic pool with the same diagnosis, these boyz are as different as night and day!





 

Little Joe

Looking back on Joe as an infant, it is easy to see he had autism.  Of course DH and I had very limited experience with babies so to us, he was just "Joe" and if we thought anything was wrong, we figured it was because we didn't know how to handle a baby.

3 trains in one hand - that is a unique skill.

But Joe did not like cuddling much.  He never imitated noises and if you would try to imitate his noises, he would get quiet and listen to you but not make his own.  He ALWAYS had at least two things in his hands at all times.

He would make himself go rigid when he was angry and he went to sleep best by being left alone.  Of course, unlike many children with infant onset autism, Joe also slept like a rock.  He slept through the night at 2.5 months and before 4 months he was sleeping 12 hours straight every night.

We were in a playgroup and I noticed that all the other kids were starting to talk at around 10 - 18 months, but not Joe.  Nor was he pointing.  I started pouring through What to Expect the First Year and couldn't find anything about late talking children except autism.  The description in those days was quite narrow and of course, Joe didn't sit in the corner and rock, he didn't toe walk and he wasn't excessively flappy.  As a matter of fact, my incredibly non-autistic niece did much more toe walking and flapping than Joe!

At 18 months, DH and I were assured by everyone and their pediatrician that Joe would be talking by age 2 and to just "Give it time. Boys take longer."

Needless to say at 2 Joe still wasn't talking.  As a matter of fact, he had about 15 words when he was evaluated by a speech therapist shortly after turning 2 and 5 of them were letters of the alphabet.  He had briefly said "see" and sort of waved in a direction (although still not pointing) but "see" degenerated into "gee" which degenerated into "guy".  Needless to say the SLP that First Steps provided was not impressed and she was the first one that said "PDD-NOS" to us (of course with all the necessary disclaimers "I'm not a doctor", "You really need to get him evaluated", etc.) 

We loathed that first speech therapist for more reasons than just the fact that she was the first one to say "autism" to us.  She had a very hesitant way of speaking, constantly apologizing and never finishing her sentences, and DH and I just looked at her and at each other and thought, "This woman is going to teach our son to talk?"

After her we did get a wonderful speech therapist that we loved and Joe loved, but he still didn't talk.  He actually deteriorated further to where he only had 10 real words, so we finally bit the bullet and took him to a neurologist.  

As with the speech therapist we managed to get the worst neurologist in town.  He had hideous eye contact and stupid boring toys and then said that Joe had poor eye contact and wasn't interested in toys.  Well duh!

Of course the sad thing was that he was correct in his diagnosis.  We were still in massive a bit of denial but we did enroll Joe in a special needs preschool and sign up for a parenting course for parents of autistics.  Meanwhile I read everything I could get my hands on. 

Sometime that fall I read Let Me Hear Your Voice by Catherine Maurice.  The book was incredibly inspirational and really motivated me to get going on ABA.  At that time ABA was not being funded at all through the schools so we were looking at privately paying.  Needless to say, that can get pretty expensive pretty quick so we decided to do something we jokingly referred to as "high chair therapy".  We could still cram Joe into a high chair and it was an easy way to restrain him.  We got a handful of favorite snacks and tried to get him to imitate us or say certain things in exchange for a snack.  

He resisted at first -- big surprise!  In one of the early sessions, DH was working with him and Joe grabbed DH by the cheeks and pulled him in close as though to get his attention.  Then he smacked DH upside the head as hard as his little two year old arm could hit.  As DH said, "He might not have been talking, but he got his point across perfectly!"

Clutching foam letters & numbers at Discovery Zone.

We kept putting him in the high chair multiple times a day for several weeks and eventually this did turn out to be our breakthrough.  He went from 10 words to about 100 in the span of a week.  His pronunciation was still atrocious, but we were over the moon.

About six months after this, we started our home ABA program.  We were privately paying for it so we only did it for about 10 hours a week.  But this was the jackpot.  Joe could have been the poster child for ABA.  

His preschool teacher (whom we didn't tell about the program) stopped me one day as I was dropping him off and talked my ear off about all the amazing progress Joe had made during summer school that summer.  Um, yeah, that isn't to your credit that is due to the fabulous paras we have!  We did tell her at that point though that we had been doing ABA and she helped us to get partially reimbursed by the school district.

ABA was Joe's primary method of learning for a year or more.  One para taught him most of his prepositions in one afternoon by having him get "on" the table, "under" the table, etc.  It was fun for him and yet incredibly educational.  Another taught him his colors in exchange for her French fries.

And of course, DH and I learned so many "foolproof" ways to deal with autistic children that we couldn't fail when we had a second child with the exact same diagnosis, now could we?!?!?!

So what's Alan been up to?

It may seem that I've been overly preoccupied with Joe lately.  In a big part, it has been because I see so much of him every day.  He is not working yet (please God, let that happen soon!) and therefore I think of him a lot.  My last few blogs were about Father's Day (and after all, Joe is the one who first made us parents) and the cats (and Joe was the one who really wanted both Misty and Diesel) and so I really haven't said much about Alan -- although I did arrange a funny collection of his climbing pictures on Facebook!

But Alan has actually been having a very good summer.  His first week was rough.  Despite having our back to school "conversation" that made me so happy, his first week of summer school had some difficult hellish afternoons.

A big part of it was just the different schedule.  He used to get home from school around 4 pm.  We eat early around here so he could have a snack and easily make it to dinner time.  But now he was getting home at 12:30.  Uh oh!  That didn't cut it.  He actually had to eat some healthy stuff or play or something to pass the time.  He spent the first four days sitting less than three feet away from me saying "medicine, medicine, medicine" until I thought I would lose it.

Unfortunately this picture wasn't zoomed.  This is how close he would sit to me -- ALL afternoon!

After Alan figured out the schedule, he has practically been my dream child.  He has been doing amazingly well at school, too.  He is really getting the hang of his school issued iPad with the communication program Go Talk Now.

When he wanted to watch his videos, he used to sit in front of the TV holding the DVD box in his hand and just bellow "downstairs" (when he was upstairs) and "blue ball" (when he was in the basement -- long story!)  Of course he never (or rarely) watched TV on the main floor.  Figures.

After a little work he now goes and gets his talker (what we call the school issued iPad) and proceeds to press the buttons so that he tells us what video he wants to watch -- and NO bellowing.  He is even doing this for the babysitter and when we had company over.  The best was when he tracked down both of us (on different occasions) when we were nowhere near the talker and handed it to us.  Success!!!!

And this is how he gets out of bed in the morning.

For those that do not know, Alan has apraxia (an oral motor planning problem) so that when he wants to say something, that isn't always what comes out of his mouth.  I knew this, but it has been sort of awe-inspiring to see the way the GTN has improved his ability to communicate and really cut down on the screaming.

Some very clear examples are the time he verbally asked for a cherry pop-tart but typed out blueberry on the talker.  I gave him the blueberry and he took it without a fuss.  If he had truly wanted the cherry, this would have been a time to pitch a fit, but he happily accepted the blueberry.

And just this afternoon he asked for The Star of Christmas DVD (a Veggie Tales movie) verbally, but I waited until he had typed in on the talker and what he really wanted to watch was Thomas' Ultimate Christmas.  So here were two very obvious times that would have caused stress in the house if we had listened to what he said but by using the talker, we bypassed the difficulty.

Now we just have to move him into abstract concepts.  OK, that might be a bit down the road.

Exceptional?

We had Alan's transition meeting yesterday since he is starting high school in the fall.

Overall it was a great meeting.  His current teachers obviously love him, the high school teacher was very positive about his recent communication break through (switching to "Go Talk Now" on the iPad) and DH and I were praised as "exceptional" parents.

So what is my gripe?  If we are "exceptional", then I think most parents are missing the boat.

The sort of things that got us praised were silly things -- the funny Christmas card with all his goofy climbing pictures, keeping after the doctor until we got a good medicine mix that would control his OCD and programming and using the communication iPad.  The last item the speech therapist went on and on about for what seemed like 10 minutes.

That was supposed to be the condition of getting a communication iPad from the school -- that we work with him at home as well.  After all, that is the goal, right?  Not just to have him communicate at school but at home as well.  So why is that unusual?  Shouldn't all parents make the time to take pictures of food choices and his favorite videos and restaurants?

I only spent an hour or so programming it and I really thought I should have spent more time on it.  But the SLP kept gushing about how much I did.  That just seemed a little sad to me.

To Blog or Not to Blog ... that IS the question!

I am a classic youngest child.  I am a "peacekeeper".  By this I mean that while I have opinions on lots of subjects, I don't really feel the need to have everyone agree with me.  Many people who are very close to me think they know how I feel about certain topics and some of them are dead wrong.  If someone is on a political or religious rant I tend to either tune them out or try to see their point of view.  If their opinion is different from mine, I usually do not express mine at the time.  It is just my peacekeeper personality.

I started this blog late last year as a spot to vent about the boys.  I love my boys like crazy but they also irritate me at times -- what kid doesn't?  They are also a continual source of laughter and that was my initial goal -- to entertain the masses with their antics and if I found some other moms or dads with younger kids, maybe I could offer them some help, advice or experience.  I never wanted to deal with controversial topics.

I guess I should have considered my audience.

I read a lot of other special needs "mom" blogs and love them.  Even those that have very different parenting styles from my own still have a great love for their children and a funny point of view that I enjoy.  Sometimes I look at these blogs and think "thank

goodness Alan isn't still finger-painting in his poop" or "thank goodness I like the kids' schools and their teachers seem on the same page as we are" or even "thank goodness for DH, because he is a huge help!" and it helps keep me thankful for my lot in life.

On the other hand if I only looked at my Facebook feed (which is mostly moms of typical kids that I know from other walks of life) I might be having a daily pity party because everyone I know seems to have high school seniors and all I am hearing about are college plans and majors and I'm just hoping that Joe can get a job.

So I try to do a balance. I read about the struggles of other moms of special needs kids and compare my life to theirs and I'm in the middle of the pack.  Some have more "issues" and some have less but at least I don't feel like a freak.  Then I check my real life friends and can be genuinely happy for them.

But writing the blog is a different story.  I have recently wondered if I want to bother with the actual writing because people can be so mean.  For some reason people feel like it is fine to tell you anything they want (including how wrong you are) on your own blog.  A blog is by definition personal, so why do people have to be so hateful?

A mere two weeks ago before her life imploded, Kate from Chasing Rainbows wrote about the same thing.  I hope and pray that no one said anything horrible to her during her recent tragedy but I haven't had the time to go through all the multitude of comments to see.  I have seen an incredible amount of support and that has been very uplifting to me personally.

But during this same time frame I watched a much bigger blog (Single Guy Laughing) go though something similar.  To me, Dan is one of those guys with an interesting enough life (it isn't an endless downer, but it isn't all rainbows and unicorns either) and a fabulous talent for telling it like it is.  But wow, people just feel inclined to say ANYTHING to him just because he is a blogger.

After reading these two very different people have the exact same thing happen to them I got to wondering why I am "putting myself out there" as Kate said.  I am not making money on my blog.  It was supposed to be therapeutic.  So can't the same thing be accomplished by just reading other blogs and maybe commenting on their Facebook pages?  Is it therapeutic to be told you are wrong?

Then I considered my audience.  I was thinking that it would be mostly parents reading, but autistics do a fair amount of reading and writing of blogs as well.  Let's be honest, how flexible is the average autistic person?  Yeah.  I am pretty sure I have never won an argument with Joe in 18 years.

Unfortunately many of the more vociferous autistic bloggers do not like or agree with many autism parents.  Whether it is awareness vs. acceptance, Autism Speaks, a puzzle piece for the symbol of autism (really, is this worth debating?), the need to use "trigger" words, calling someone an "autistic" instead of a "person with autism" and whether or not it is OK to "hate" the disorder there are just a few too many divisions between autistic adults and autism parents for this peacekeeper.

I had pretty much talked myself into letting the blog die and then I got 3 new followers.  Huh.  To blog or not???